I am hoping for some advice on my recent pouchoscopy results to see if anyone experienced a similar situation.

I had jpouch takedown 8 months ago with pouchitis since then and daily augmentin since takedown. I also have a minor stricture at the anastomosis and recently I am trying to battle cuffitis, albeit not very successfully.

I was wondering how others would interpret my pouchoscpy results and if you would be concerned about retaining your pouch or if you lost your pouch due to similar issues.

My pouchoscopy showed my pouch looked good in 90% of the area, no inflammation above the pouch or limb and mild inflammation in the lower end of the pouch above the rectal anastomosis with inflammation also in the cuff. They referred to the pouch inflammation as active enteritis with 'pouchitis' in parenthesis. Thankfully there was no dysplasia found in the cuff as they noted it in my colon prior to colectomy (turned out to be indefinite in final path).

I am confused as to whether I have pouchitis or possibly crohns based upon the biopsies. Also, the stricture was dilated with just a finger and the surgeon indicated it was minor but it has only been a week since the dilation and I am still struggling to empty my pouch.

I am beginning to lose hope with my ability to maintain a healthy pouch with all these issues as even on anucort suppositories for over a week I am still bleeding.

Has anyone had a similar experience and still has their pouch? I could use some encouragement as this is getting really old going into a year soon with all these issues and none really improving.

http://www.zanecohencentre.com...ch-surgery/pouchitis

kjeane, this is a website that is interesting and on subject. I've linked the pouchitis page here but the entire section on IBD surgery is interesting.

Did you find out what the IGG4 (is that right?) test results ment?


I hope you catch a break and soon.

I've had a jpouch for just shy of 22 years. Your pouchoscopy results sound very similar to the results I got with my most recent scope (minus the stricture). It read chronic active enteritis of the pouch and chronic active colitis of the rectal cuff, both negative for dysplasia. I also have trouble emptying (no stricture though, just scar tissue) and usually have some blood but not too much. I've been having these symptoms for the past 5 years following a pouchitis flare up. All symptoms have gotten better very gradually, I no longer need any kind of suppository. I don't know if what I've experienced is as bad as what you're going through, but I am in no danger of losing my pouch and based on the information you gave I don't think you are either.

I first had these problems immediately following my takedown. I was very lucky to be able to get it under control over a couple months, and I didn't have another flare up for 16 years. So I think its safe to say that these kinds of problems can get better and stay better for very long periods of time. I can't tell you when you'll have relief from your symptoms (or when I will), but I think its way too soon to abandon hope.

I hope you feel better.

Toughenough,
Thank you for the article.

Bryan,
Thank you for the encouragement.

My pouchoscopy path test results showed no inflammation above the pouch (surgeon went up 4 feet into small intestine and all looked good). Also, there is no inflammation in the majority of the pouch as
the operative report indicated 90% of the pouch looked clean and healthy. Remember though I have been on 875 mg of augmentin two times a day for 8 months. I would have thought this pathology would have looked better on the meds (very discouraging).

I do have some active pouchitis in the distal lower portion of the pouch right above the anastomoisis and a mild stricture and inflammation in the cuff. I have read it is not uncommon to have active inflammation in this area of the pouch. In my case, possibly this could be due to my stubborn stricture.

My surgeon did indicate it is not uncommon to find active inflammation in pouches even when people are feeling well and asymptomatic so he was not concerned about these results at all... actually..he indicated he was pleased with how things looked.

The anucort is now helping with the bleeding and cuff inflammation After months of suffering with rectal itching, burning, pain and intense discomfort and complaining about it and having two in office pouchoscopies and dilations and almost 3 months on canasa suppositories, this has all finally been helped. I am just angry they waited so long before starting me on the anucort and should have had a pouchscopy with biopsies a couple of months ago. I could have alleviated months of misery and suffering.

As far as the IGG4 test goes.. I still have not gotten my surgeon's take on this as I am sure there is not much he will be able to tell me about it because it is such a new phenomenon. Of course, I have to be in the small minority who has chronic pouchitis and the stricture is a real pain to deal with and I have read it can be a cause of pouch failure.

My only saving grace is I have an incredible colo-rectal surgeon who I know will do anything to save my pouch even if it means pouch advancement surgery from the stricture or refractory cuffitis. Worrying about dysplasia in the cuff is what really bothers me in the event I have refractory cuffitis so I will just make sure I get my annual scopes and rectal biopsies to be safe in the event I am able to hold onto this pouch.

Thanks again for your comments.

Hi kjeane
I'm sorry I don't have much advice to offer you but I have read a lot of stories where people had a horrible first year with their j pouches and then got better with no further issues. I hope this will be the case for you. I truly believe its too soon to give up hope. That is wonderful that you have a a great surgeon who is looking out for you. Hoping you get some relief soon.

Ps- my stricture is finally starting to stay open now. I still have to go every so often for dilation but the months are getting farther apart. It's been a little over a year now that I have been going for dilations so there is light at the end of that tunnel.
.

I take antibiotics too, I've been on 600 mg of xifaxan since 2007. I'm still thrilled to have only a small amount of active inflammation in my pouch, its a great report for a pouchitis patient. My doctor (Bo Shen at the Cleveland Clinic) assured me this is no reason to think the antibiotics are ineffective because the amount of inflammation I have is common and no cause for concern.

There is nothing worse then when doctors force you to sit on your illness and you have to wait untreated as the gears slowly turn. I've been there many time myself, the word frustrating doesn't quite cut it. But it sounds like things are headed in the right direction.

I don't have much experience with strictures, but if its mild I don't think it will lead to pouch failure.

Mgmt,

Thanks for the stricture info regarding your situation. I find this to be very annoying as after being dilated it seems within a week or so it is narrowed again and starts giving me issues again which also aggravate the cuffitis. I hope I am like you in that mine will eventually stay open. I have read these should be aggressively treated and I do not think my surgeon is as aggressive about this as yours may have been.

Bryan,

I believe Dr. Shen also as my surgeon said the exact same thing about the small amount of inflammation being common, but I do think it is common in those of us with pouchitis more so than those who do not have it. I would like to get to a point where I can lower my antibiotic to a level like you are at.

As far as the stricture goes..time will tell. I am hopeful it may eventually stay open and if I can get the cuffitis under control, I am sure this will help. Last time the surgeon wanted to excise and cut to help with the stricture and I was nervous about this creating more scar tissue so I asked him to just dilate me under anesthesia which he did. I am not sure if another dilation will work or whether he will need to excise some of the scar tissue next time to help with some of the annoying symptoms the stricture gives me. I know there also is pouch advancement surgery where they could cut the stricture out, remove the cuff and advance the pouch and hand sew it, but I would use this as my absolute last resort.

kjeane-Do you have a bidet? I know I am always banging the bidet drum around here lately, but I used to pretty much have chronic cuffitis, and since the bidet, it is like night and day-the chronic pain and inflamation of the cuff is poof-gone (of course, now I have chronic pouchitis...lucky me...). Just a thought.

I'm no MD, but I think your report sounds pretty good. Of course we all know that functional ability counts for as much or more, in terms of how we feel and function on a daily basis.

Mild inflammation is present in every pouch, so no concern there. I'd think the big issue is the recurrent stricture. Cuffitis may or may mot be treatable. Since it is right next to the stricture, hard to separate the symptoms. They say that over time and repated dilations, these stricures tend to eventually give way and stop reforming. But, some are terribly stubborn and require surgical release. Bummer, I know.

Jan

This message has been edited. Last edited by: Jan Dollar,

Thanks everyone...I do think it is time to invest in a bidet and will be looking into one this week. I am certain it should help.

Jan, thanks for the encouragement. I really needed that this evening since I am up again with pain and issues emptying my pouch. A call is in order for the surgeon tomorrow and I do think I need to have this treated surgically as after 12 days on anucort, the bleeding has subsided, but the inflammation is still present and creating issues. After 3 in office dilations and an additional one under anesthesia, I feel pretty certain that repeat dilations are not going to fix this issue for me.

Thanks for the comments.

Another possibility is self dilation with a dilation tool at home on a daily basis to maintain the opening after dilation under anesthesia. The scar tissue mostly forms in the first few weeks, so you can taper off on the self dilations after a while. Might be better than a stricturoplasty, and might even be advisable if you choose the surgical route.

Jan

This message has been edited. Last edited by: Jan Dollar,

kjeane,
Sorry you aren't any better.

We looked into bidets and bidet seats, like the coco sponsor on here. We couldn't make them work so I got the plain old hand held sprayer and it was the best $50 I spent. I've saved that over and over again on not buying as many wipes, creams and TP. I never have B Burn either.

I think a seat or real total fixture would be awesome and hope you get one of those but if not the sprayer has enough power to clean just as well, with tap not heated water. No dryer but a little TP works well.